Louise Lévesque

“Learning to Become a Family Caregiver” Efficacy of an Intervention Program for Caregivers Following Diagnosis of Dementia in a Relative

PURPOSE The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. DESIGN AND METHODS Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a control group (n = 49) receiving usual care. Eligible participants-primary caregivers of a relative diagnosed with Alzheimer in the past 9 months-were assessed blindly before randomization, at the end of the program (post-test), and 3 months later (follow-up) on different outcomes associated with healthy role transition. RESULTS The analyses indicated that at post-test and follow-up, caregivers in the experimental group were more confident in dealing with caregiving situations, perceived themselves to be better prepared to provide care and more efficacious in their caregiver role, were better able to plan for the future care needs of their relative, had better knowledge of available services, and made more frequent use of the coping strategies of problem solving and reframing. The program had no significant effect on use of stress-management strategies, perceived informal support and family conflicts. IMPLICATIONS This program underscores that a proactive intervention approach from the onset of the care trajectory is key to fostering caregiver adaptation to the new challenges they must meet.

A Multidimensional Examination of the Psychological and Social Well-Being of Caregivers of a Demented Relative

This article focuses on a detailed examination of stressors, their appraised disturbance and a broad range of resources as well as on an assessment of their relationships with five dimensions of psycho-social well-being. Caregivers (n = 265) who cohabit with a demented relative composed the sample. The results indicate the importance of a multidimensional examination of both factors and well-being. Indeed, the saliency of the occurrence of the stressor and the degree of its disturbance seem to depend on the meaning of the stressor and/or its predictability/unpredictability in relation to a specific dimension of well-being. Only one stressor, the occurrence of disruptive behaviors, is linked to three dimensions of well-being (psychological distress, negative and positive feelings about the caregiver role). Stressors/appraisal factors are most often associated with negative indicators of psychological well-being (psychological distress and negative feelings about the caregiver role) than with positive indicators (positive affect and positive feelings about the caregiver role). Moreover, positive resources are linked to positive indicators of psychological well-being while negative resources emerged as relevant for negative indicators.

Challenges associated with transition to caregiver role following diagnostic disclosure of Alzheimer disease: A descriptive study

BACKGROUND The prevalence of Alzheimers disease is rising. The large number of new cases identified each year means that many new families will set upon a long trajectory of caring for a relative with dementia. Diagnostic disclosure of Alzheimers disease marks the official transition to the caregiver role, yet this early period of the caregiver career have rarely been studied. OBJECTIVES Based on Meleiss theoretical framework for role transition, the objectives of this study were to document the characteristics of the caregiving context during the transition to the caregiver role following diagnostic disclosure of Alzheimers disease and to compare these characteristics by caregiver gender and kinship tie to the relative. DESIGN SETTINGS AND PARTICIPANTS A descriptive design was used. Data were collected using standardized measures selected in accordance with the role transition theoretical framework. The sample recruited in Quebec (Canada) cognition clinics comprised 122 caregivers of an elderly relative diagnosed with Alzheimers disease in the past nine months. RESULTS Findings reveal the context of care to be marked by several challenges for caregivers. The majority of caregivers receives little informal support, has poor knowledge of available formal services, and has difficulty planning ahead for the relatives future care needs. Caregivers themselves report a lack of preparedness to provide care. Compared with men caregivers, women seem to have more problems controlling disturbing thoughts about their new caregiver role and to experience more family conflicts and psychological distress. Compared with offspring caregivers, spouse caregivers are less able to respond to the relatives disruptive behaviors, make less use of problem-solving strategies, and report fewer family conflicts. CONCLUSIONS The challenges faced by caregivers during the transition to the caregiver role are sensitive to nursing interventions. Pro-active interventions from the outset of the caregiving career, such as early assessment of caregiver needs for support and of caregiver preparedness to provide care as well as early psycho-educational interventions, are essential to foster positive caregiver responses to the challenges of their new role.

Development of an Intervention Program for Alzheimer's Family Caregivers Following Diagnostic Disclosure:

The purpose of this qualitative study was to develop a pro-active psycho-educational intervention program for Alzheimers family caregivers following diagnostic disclosure. Based on a theoretical model of role transitions and a participatory approach, the study comprised four steps: (a) exploring caregiver needs; (b) developing and validating a program proposal based on caregiver-expressed needs; (c) formalizing program through intervention mapping; and (d) testing and qualitatively evaluating the program. The psycho-educational program consisted of seven individual sessions aimed at fostering knowledge and skills required to ensure successful transition to the caregiver role. The approach used in this study can serve as a guide for the development of nursing intervention programs. Intervention mapping allowed, in particular, integrating theoretical and empirical elements in a formal intervention model.

Understanding the outcomes of a psycho-educational group intervention for caregivers of persons with dementia living at home: A process evaluation

This qualitative process evaluation study aimed to identify the primary processes of a psycho-educational group for caregivers of persons with dementia, in order to better understand intervention outcomes. Semi-structured interviews were conducted with 30 participants recruited from the experimental group of a randomised controlled trial. At pre-test, participants reported their expectations of the group. At post-test, they described their group experience, the most/least helpful aspects of the intervention, their most useful learning and their responses during a recent episode of disturbing behaviour by their relative. Results showed that the group delivered both educational and support processes. Support processes complemented educational processes. Participants learned coping strategies, with reframing playing a more important role than problem-solving or seeking social support. Daughters benefited more than spouses from educational processes. This study of group processes contributes to our understanding of the reported reduction in frequency of disturbing behaviours and of the change in caregivers’ behaviours.

A partnership approach to service needs assessment with family caregivers of an aging relative living at home: A qualitative analysis of the experiences of caregivers and practitioners

BACKGROUND As the global population ages, support for family caregivers who provide the bulk of care to community-dwelling older people is becoming ever more important. However, in many countries, homecare-service practitioners currently do not follow a systematic approach to assessing and responding to caregiver needs. OBJECTIVES The aim of this study was to explore the experiences of caregivers and practitioners who took part in a field test of the Family Caregivers Support Agreement (FCSA) tool, a modified version of the Carers Outcome Agreement Tool (COAT) initially developed as the result of an Anglo-Swedish study. Both the COAT and the FCSA are designed to facilitate partnerships between caregivers and practitioners so that needs assessment and subsequent support services are negotiated and agreed so as to meet caregiver expectations. DESIGN AND PARTICIPANTS A qualitative design was adopted and data were collected through focus groups with six practitioners (nurses and social workers) working in two Local Community Service Centres in the province of Quebec (Canada). These practitioners had previously completed the FCSA tool with 17 primary caregivers of frail elderly relatives who were clients of homecare services. Individual interviews were conducted with the caregivers to explore their experiences. Data were analyzed to identify significant themes, from the perspectives of caregivers and practitioners, which provided insights into their experiences and the strategies used by practitioners to facilitate partnership working. FINDINGS To facilitate meaningful exchanges, practitioners adopted strategies such as sensitive listening and the use of enabling questions to identify and contextualize caregiver needs and to highlight the ability of caregivers to find their own creative solutions to the challenges they face. The caregivers described experiencing a climate of trust that allowed them to express their concerns, to reflect upon their situation and to participate in the development of an action plan for their support. CONCLUSIONS The study reaffirms findings from Sweden and UK that the use of a tool such as the FCSA enhances partnership working and creates a caregiver-practitioner relationship based on a genuine alliance. As a result, both parties gain new insights into the caring situation. The approach underpinning the FCSA tool has potential for a more widespread application in different contexts.

Older Husbands as Caregivers Factors Associated With Health and the Intention to End Home Caregiving

The purpose of this study, based on Pearlin et al.s model, was to determine the factors associated with the health of older husband caregivers and with their intention to end home caregiving for their wives. The results showed subjective stressors to be associated with outcomes. Role overload was linked to psychological distress and to lower self-perceived health, whereas role captivity was associated with psychological distress and the intention to end home caregiving. The likelihood of ceasing home caregiving increased when caregivers reported high relational deprivation. A high percentage of the variance in psychological distress was explained (51%). The quality of prior husband-wife relationships, the frequency of disruptive behaviors, family conflicts, and self-efficacy were associated with this variable. Selfefficacy had a mediating effect between subjective stressors and psychological distress, whereas the number of services received had a moderating effect on the intention to end home caregiving among husbands with high role captivity. This study provides avenues for interventions sensitive to male caregivers.

Changes in Health Outcomes among Older Husband Caregivers: A One-Year Longitudinal Study:

This one-year longitudinal study carried out on a sample of 232 older husband caregivers sought to describe changes in psychological distress and self-perceived health, and to examine relationships between factors drawn primarily from Pearlins model of caregiving and changes in these two health outcomes. Prediction analyses shows that nearly two thirds of the husbands have unsuccessful outcomes with respect to these two dimensions, that is, most husbands obtain either steadily poor scores at both times of the study or worse scores on one or both outcomes. Higher levels of education and informal instrumental support at time 1, as well as an increase in role overload, are predictive of unsuccessful outcome for psychological distress, whereas an increase in self-efficacy predicts successful outcome for self-perceived health. Overall, husband caregivers vary in their response to caregiving over time. The findings support previous study results showing subjective stressors, rather than objective stressors, and caregiver resources to be significant predictors of caregiving outcomes.

Follow-up of an intervention program for caregivers of a relative with dementia living in a long-term care setting: Are there any persistent and delayed effects?

The purpose of this randomized study was to test the persistent and delayed effects of an intervention program entitled “Taking Care of Myself ” on selected mental health outcomes of daughter caregivers of a relative with dementia living in a long-term care setting. One group of caregivers took part in the experimental program (EG, n = 45), one in a comparison program offered by an Alzheimer Society (AG, n = 51), and another constituted a control group (CG, n = 41). Effects were verified at the end of the program and 3 months later. Results from prediction analyses reveal that competence dealing with healthcare staff and use of the coping strategy of reframing were persistent effects unique to the EG condition, whereas perceived availability of informal and formal support was a persistent effect in the EG and in the AG. A delayed effect was observed in the AG regarding competence dealing with healthcare staff. These results underline the importance of follow-up assessments of intervention programs and suggest avenues to support caregivers of institutionalized seniors.

‘Taking Care of Myself’ Efficacy of an intervention programme for caregivers of a relative with dementia living in a long-term care setting

The purpose of this randomized study was to test the efficacy of an intervention programme entitled ‘Taking Care of Myself’ on selected indicators of mental health of daughter caregivers of elderly parents with dementia living in a long-term care setting. The programme is based on an empowerment perspective and on a stress and coping theoretical framework. Three groups of caregivers were compared: one took part in the experimental programme (EG, N= 45), one in a comparison programme offered by a Quebec Alzheimer Society (AG, N = 51), and another was a control group (CG, N = 41). Two successful outcomes are unique to the EG condition, that is, competence dealing with health care staff and perceived challenge of the caregiver role. Prediction analyses also provide statistical support for the efficacy of the EG and AG conditions to produce successful outcomes with respect to common indicators (perceived threat and role overload, control by self, informal/formal social support, and use of the coping strategy of reframing). These results provide avenues of intervention for promoting the mental health of caregivers of an institutionalized relative.